Thyroid Mystery...PLEASE HELP!!!!

[Sally042]

I really hope that someone can help because I am at the point where I think I'm going crazy. I was diagnosed with thyroid cancer in August 1997 and had my thyroid, parathyroids, and lymph nodes in my neck removed. I was originally placed on Synthroid after surgery and loved it. I also loved my endocrinologist, who moved his practice to Boston and I got stuck with the idiot I have now. HE switched me to Levoxyl, 112 mg which I have been on for years. This past December at my annual check up he switched my dose from 112 to 125 and I have been in hell ever since. He said that my numbers looked low in December (I was on day one of my period, and have been having HORRIBLE periods, could your menstrual cycle affect your thyroid levels??) When I was on 125 I started having panic attacks, high anxiety and depression. I was put on Ativan which I hated and when I stopped it went through horrible withdraw. I had my blood checked 6 weeks after being at 125 and endo said levels looked good and to stay put. I felt so sick on this dose that I went to see my regular doc and she said that I was way over medicated and put me back at 112. Since doing that the anxiety and depression have subsided but now I am experiencing dizziness, and numbness up and down my right side which is not constant but when it does hit makes my right leg and arm feel really heavy and my fingers/toes very tingly. I have also had sinus infections since January which do not seem to clear up with antibiotics. My vision has become really bad and I am now wearing bifocals. I have a lot of pressure in my temples that the docs say is either my sinuses or that I am just stressing myself out. I am TERRIFIED that i have a brain tumor and have cried myself to sleep night after night thinking that I am dying. Could these sudden and strange neurologic symptoms have anything to do with my thyroid problem? I have extremely high levels of antibodies that have always been there and I heard from someone that antibodies can not only attack thyroid, but your brain eventually. Can anybody help me because I am sick of going to doctors and just being put on more meds instead of someone accurately diagnosing me. I'm not depressed our crazy, just looking for an answer. HELP!

[Smilerdeb]

I thought too that I had a brain tumour.
I didnt.......

I had a Pit. tumour which was removed 2 weeks ago with no probs whatsover.
Was I scared? I was scared stupid........It took me 3 months to get the CT scan done as I had a lot of personal issues going on and couldnt handle 'another' bit of bad news.
Dont stress....you will be ok but start the 'eliminatation process'...one by one.

Female hormones ALSO play a BIG part with the thyroid.

Research all you can on thyroid issues...it is well worth it.

[Barb135]

Vitamin B12 deficiency can cause a lot of the symptoms you mentioned, such as fatigue, tingling, numbness, etc in the hands, feet and legs.  I have pernicious anemia (B12 deficiency) and have to take shots for it because I don't absorb it through my stomach like most people do.  I was actually diagnosed with the pernicious anemia when I was in my 20's and started on shots, but I didn't keep up with them and no one ever checked it again until about 3 yrs ago, when my symptoms became so bad, I could hardly function -- it was no wonder I was tired and had so many symptoms for so many years!!!  

My thyroid issues were diagnosed about 2 yrs ago - Hashi/hypo.  

Magnesium is good for muscle function; it's also necessary for calcium to be absorbed; AND it's calming.  I split my dosage of calcium and magnesium in 1/2 - one half at noon and the other just before bedtime.  It really helps with the muscle/joint pain.  Always be sure to separate your thyroid med from vitamins/minerals by at least 4 hours as the vitamins/minerals will inhibit absorption of the thyroid med.

Like goolarra said, thyroid antibodies will not attack your brain, and with no thyroid they should not be having any effect or causing symptoms.  It also makes no sense that your endo says he can't get a good TSH reading because of the antibodies... .. TSH is a pituitary hormone and is basically secondary because that's not what causes your symptoms anyway; you need to look at the FT3 and FT4 levels, along with your symptoms in order to get your med adjusted properly.  

You should always get a copy of any lab reports - you are entitled to them by law and if you keep copies, as was stated above, you can compare the way you feel with the levels on the lab report and your med dosage to help keep stabilized.  Also keeping a copy of your labs will be helpful if/when you change doctors because if you can give your new doctor copies from your files, you don't have to count on the old doctor to provide copies.  

If you can get your latest results, please post them here, along with the reference ranges, since those are lab specific.  

It is not absolutely necessary that you have an endo and since it sounds like your pcp is much easier to work with - you might want to just drop the endo and stick with her.  So long as she does the proper testing and keeps close watch on your symptoms, she sounds like the better choice.  You might want to discuss that possibility with her.

[runninggirl123]

B12 is an important vitamin and key to a good functioning nervous system. Magnesium plays a key role in  muscle function as well. Most doctors usually will check the B12 as soon as there are any neurological issues. Many Thyroid patients seem to have low levels of B12 and therefore need supplementing.

I'm NOT a doctor and it is important to work with a doctor.on your issues. I'm just a patient with almost 30 years of Thyroid disease experience..... Educate yourself....read a lot ...There are some great resources out on the net. I'm glad that we're able to help you by just sharing our stories.....That's what this forum is all about!

[Sally042]

You know what...it totally did. I thought that perhaps the fact I was feeling really ill that day due to my period may have affected my numbers but now that you say that...wow.
Well, I get tested again next month so I will be very anxious to see how my numbers are. What did you mean about magnesium and B-12?

Sorry. I am starting to feel like you are my doctor. I am just so starved for information I'll take anything that I can get right now.

[runninggirl123]

Yes, there should be at least 4 hours between taking Thyroid meds and Calcium Supplements. Taking them too close together can also affect absorption of your Thyroid meds. Did your change in routine of taking supplements happen about the same time you needed more Thyroid meds? Just a thought.....

[Sally042]

You all are making me feel so much better so I just want to thank you for that. Runninggirl, I have low blood calcium due to the removal of my parathyroids. My body does not make its own calcium, so I take 2,000 mgs daily of OTC Calcium Supplements and .75 mcg daily of Calcitriol (Rx Vitamin D) My calcium levels were dangerously low and I believe that is due to the fact that when I was on that higher dose, I took it in the mornings instead of at night when I usually take my thyroid pill because it made me so wired I couldn't sleep if I took it at night. But, I also take Calcitriol and calcium tablets in the morning. I just recently found out that Levoxyl can severly affect absorbtion of calcium, and I was not giving enough distance between when I took my medicines. I think that I am still low calcium, which is partially why I am having tingling and numbness.

[runninggirl123]

One more thing that comes to mind. Did they ever check your vitamine B12 , Magnesium, Calcium and Vitamine D levels?
It appears that low levels might sometimes cause symptoms as well. It might be worth  checking. Thyroid patients seem to be more prone to it.

[Lori575]

I'm sorry to hear you are going through this, but wow, so much of this sounds like what I went through.  I have very high antibodies for both Graves and Hashi's.  My Graves was in remission for aboug 15 years, and my doctor found that my thyroid was a little under active, so he put me on levothyroxine.  I was on that dosage for the longest time (can't remember what it was back then), and all the sudden, out of the blue, I started getting all these off-the-wall neurological symptoms.  It started with a beesting feeling in my feet, and then it turned into numbness/tingling in my feet/legs/hands, etc.  One day I felt as if someone slapped me in my face because it was tingling so bad.  I had dizziness spells, menstrual irregularities, and a ton of other weird symptoms that sent me to the ER one night.  After seeing a nuerologist, he found that I actually had some nerve damage, but tests for tumors, MS, etc. all came back negative.  I was sent to a great Endo who adjusted my meds, and I've been fine since!  It sometimes doesn't take much of a tweak to get the correct levels for you.  I take a very odd dosage.  I take 75mcg of Synthroid daily, with an extra 1/2 tablet on Saturdays.  Very strange, but it's what works for me........that's key.  You need to make sure your doctor works with you to see WHAT IS RIGHT FOR YOU....it may not be right in the middle of the so called "normal range."  Hang in there, and make sure you force your doctor to work with you.....he/she works for and gets paid by YOU.  Good luck!!
Lori

[runninggirl123]

I would suggest to ask your doctor for your past test results. They have to give them to you. Then you can keep them for your records and write down on what dose you were and how you felt at that time. This might be a helpful tool for both you and the doctor working with you. As Goolarra suggested have the full panel of TSH, FT4 and FT3 tested where the FT4 and FT3 are the most important ones  because they're the active Thyroid levels. Each person has their own "perfect" level where they feel best. The considered "normal" ranges are pretty broad and it is often times a matter of fine tuning. Some people, including me (and you might be one of them too) are very sensitive to changes in meds.
This is what I did and how I found out about the correlation between my elevated FT4 and the neurological problems.
I know how frustrated it is to hear time after time that neurological problems are not related to thyroid problems, and it is true that most people don't experience them. Just know that there are people who do.....and no....you don't have to feel sick for the rest of you life,......things will get better!

[Sally042]

Runninggirl, that helps a LOT. I am sick to death of hearing from my endo that these weird symptoms are "all in my head" and "not related to thyroid because my levels were normal." I wish I had numbers to give you right now but he never relays that information to me. I Am currently looking for a new endo right now :) I never had any of these symptoms until the Levoxyl changed from 112 to 125, so I really have no choice but to think that the medicine jump is what caused all of these problems to suddenly appear. My regular MD put me back on the 112, and the endo warned me not to because my risk of cancer coming back increases. This also has me scared to death. The ultimatum given by the endo: stay on 125 and take anti-anxiety and anti-depressant meds. The regular doctor's suggestion: go back to 112 for 3 months and get your blood work checked and if your numbers are low, we will figure out a game plan. Maybe I'm crazy but I like the MD's suggestion better. I find it hard to believe that I need to stay on that higher dose and feel sick for the rest of my life.

[runninggirl123]

I just wanted to let you know that I'm sorry you have to go through this. I know first hand the anxiety after having been over medicated for 9 months. My TSH levels stayed within the normal range and didn't even change after dose increases.I needed the increases because my TSH was at one point  5.5  and considered too high. My FT4 levels were always borderline high. I too developed neurological problems (nerve pains in arms, muscle twitches all over my body, jerking thumb, panic attacks) The doctor put me on Diazepam to calm down my nervous system. MS diagnosis was of course in my mind all the time and causing even more anxiety! I decided to very slowly decrease my dosage on my own....a small decrease every 3 months. It was a long road but I'm feeling so much better now. All the weird neurological symptoms disappeared as soon as my FT4 levels dropped.   So yes.....neurological problems and thyroid issues can be related. Whenever I go hyper again, my weird symptoms come back, and I know it's time to go to the lab again and have my FT4 and FT3 levels checked again. So far there has always been a correlation between my elevated FT4/FT3 and neurological symptoms. I hope my story will give you hope and that you will feel better soon...

[goolarra]

Just to calm your fears on one point...antibodies are very specific.  Thyroid antibodies can ONLY attack your thyroid and NOTHING else.  They will not attack your brain.  When you get immunized for, say, smallpox, that causes your body to make antibodies against the smallpox bacteria and only that smallpox bacteria.  If you want to be protected against polio, you have to get another vaccine.  Your antibodies are not attaking your brain.

Since your thyroid has been removed, you don't have to worry about the antibodies for any reason...they are not causing your symptoms.

However, it's very possible that your meds are not adjusted properly and that's what's causing your symptoms.  Do you have FT3 and FT4 results (include the ranges from your lab report since these are specific to each lab) and TSH?    

[compnet]

"I feel stupid because my endocrinologist has never educated me on TSH, Free T3 and Free T4, what they are or what my levels are."
From what I've been learning on the board, a lot of doctors don't know much about them.

[Sally042]

Compnet, thank you for your kind words. I feel stupid because my endocrinologist has never educated me on TSH, Free T3 and Free T4, what they are or what my levels are. As far as the antibodies, all he's ever said is that they are always there when he does blood work so he can never get a clear reading on my TSH because of them. I have scans yearly to make sure the cancer did not come  back and I have not had any recurrence. I am getting tested in another month and my regular doctor has promised to test Free T3 and Free T4 and help explain the results. I just hope i can make it another month in the meantime...

[compnet]

You have antibodies, for graves or Hashimoto?  Hashi would cause a lot of up/down swinging.  Do you have TSH, Free T3, and Free T4 labs and ranges?

"I am TERRIFIED that i have a brain tumor and have cried myself to sleep night after night thinking that I am dying."
That's A LOT of anxiety.  Would it help calm you to focus on the fact that you don't know there is a tumor?  Might it help to take the Ativan in the meantime?  I've had a bad panic attack before over worrying something similar and I know how horrible it can be.  Lorazapam helped me alot through the attack.  I don't like hearing your hurting over that especially when you don't know you have it.

God bless you.